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12 May 2009

Dementia update. Dad's placed.→[More:]

OK, two Thursdays back my Mom was recovering from flu and I was watching my Dad for symptoms, since he was getting more and more difficult to get clear communication of this sort. He was obviously ill, but how ill? On Thursday afternoon he was complaining more than usual about one of his legs (diabetic neuropathy) and his wheezing had gone over to gurgling. He had an appointment with his GP on Friday, though, so I debated whether he really needed urgent care, or just "more" rest.

My Mom and I went to an elder planning seminar by the attorney we want to hire to set up the special needs trust (for my nieces and nephew) that will protect the property from Medic[are/aid] lookbacks and clawbacks. That night, though, after dinner, he was barely able to speak because of the gurgling, and so we had to go to the ER.

At the ER they intubated him in some fashion but then he waited four hours for a doctor, because the guy on call had to run out twice for code blues upstairs. Then at 3 a.m., after I'd taken my exhausted Mom home and run back, they found he had tachycardia. He peed himself at one point trying to get up with his IV attached instead of waiting for a urinal, then with the catheter in still kept demanding to get up because he was imagining he felt "rain" on his thighs. Then when he was admitted, I stepped down the hall to pee myself, got back, and found he had pulled out his IV and was spurting blood all over the exam room.

So he spent a week in the Special Care Unit, all of it with a 24/7 sitter. The arrhythmia was improved, the pneumonia was avoided, the lungs were drained, and his sky-high glucose was brought down. The better he got, though, the more we worried about having him home, getting into stuff. With frontotemporal dementia, you can't understand your own level of sickness, and he wrote a long letter to the doctor on why he needed to be released. There were two items about his medical condition, and seventeen about the things at home he was concerned about (from caring for the kids to the bankruptcy) that he really wasn't needed for anymore, for months.

Beginning Monday we were talking about home care options with a visiting nurse, then Wednesday his doctor and our caregiver support person were urging us to put him in placement, then we were told he was being placed without us even looking because he required skilled nursing, then it turned out he probably didn't qualify for a skilled nursing placement because he had improved enough. Then there was the bed availability question, which cycled through half-a-dozen facilities in at least three counties.

Finally today one was found, 40 miles away. My Mom and I met with someone at a Perkins and signed all the papers to admit him there tomorrow.

He was primarily concerned about his clothing. We tossed the clothes he liked to wear, mostly grimy, torn, or frayed, and gave him stuff from his closet he may not remember (or fit). He called home three or four times insisting that we let him know when we were coming with the clothing. We got there around 8:30, and after some brief discussion of his move, he said "Well, since you brought the clothes, I guess there's no more reason for you to be here."

Unlike Alzheimer's, where you eventually don't know people, with FTD you eventually don't have any empathy for people. To him, we've become a delivery service, for items or information.

He's been happy to see most of the ex-employees we've sent his way, though he doesn't always remember them. The highlight was his visit with my nephew's new kid, Izak. But he had very little interest in my nephew or his girlfriend.

He had been putting out objections to moving, but I'm hoping that he adjusts just fine. In a way he already doesn't need us to visit.

Now -- now I get to worry about the financials. My Mom's full-time-employment insurance will cover the first 100 days, or maybe not all of it. What will the co-pay be? Six figures? Then there's the long-term care insurance. 2190 benefit days, but $130/day is not going to cut it. Does that mean only three years of coverage? Or more potential impoverishment for my mother?

I really wish I didn't hate him. It was the disease, but it goes back farther, so it wasn't all the disease. Thank God for the LTC insurance, but it may not be enough. The property is an investment, but mismanagement for years and years meant it barely broke even, and now it's on the verge of being taken away by the banks or the state (for Medicare).

It does feel less stressful around here without him watching everything I do on the computer, asking for "my Quicken" back, running off hitchhiking with cash to pay people in the pre-bankruptcy period, and generally still acting like the family office manager. I guess it's time for me to cross my fingers and meet with attorneys to see what can be salvaged.

So anyway ... it isn't quite the same thing, but HBO has its Alzheimer's Project fully streamable online. It's superb, but emotionally difficult (for me at least).

It's hard, but from what you've said he needs to be in a care facility. You absolutely did the right thing, for you, your mom, and your dad. He will get care there that you and your family are unable to provide at home, and hopefully without the day to day challenge of trying to live your life while also being a full time nurse and nurses aide your stress level and resentment will decrease.

There will be a social worker at his new residence. Call and get an appointment with them, they will know all the ins and outs about payment, what happens to his property and your mom, the long term, etc. This is a free resource they provide to families and residents, take advantage of it. They're experts in this, and it's a very complex legal and logistical minefield. What you may research for days they'll be able to answer off the top of their head.
My mom has worked in long term geriatric care for most of my life, and the people in those facilities absolutely don't want to see families stripped of their possessions to pay for care when one person is ill. They'll know how to handle everything so your dad and mom are both OK.

Oh, and if you like the staff at his home, make sure to tell them... the patients almost never do, and my mom always loves when families compliment her or any of her staff on the care they provide. Even just to say "thanks for taking good care of my dad." It's an emotionally and physically draining job without a lot of appreciation.

Hugs to you, dhartung! And repeating what everyone has said: your family really, really needs some relief from the fear and pressure and necessity for constant watchfulness and worry. I hope this will ease the situation for you all.

Thank you so much for sharing dhartung, and so eloquently. I really hope you have reached a turning point and things start to improve from this point forward. I empathize with everything that you and your family have been put through. Also, kellydammit brought up a VERY important point. Definitely talk to the social worker. Good luck.

Yes, it's me, dhartung, back on the other computer. I suppose there are new bunnies now and then who don't know this.

The financial future still looks bleak (and because of the bankruptcy and the special needs situation, multiply complexity by three). But at least the worry over what he'll do NEXT is gone.

I've sort of moved rather quickly to the Kubler-Ross acceptance stage in terms of the Dad I knew. He's been gone for months, maybe even years looking back. My Mom has more anger issues with him than I do. She feels deeply betrayed. But even she called the last two weeks "a living wake".

I'm beginning to think that he'll adjust to the facility sooner rather than later. He had suggested divorce in the past and last week when we refused to pressure his doctor to release him he said "I need a new family." We were worried about him triggering an expensive guardianship proceeding by throwing a shit fit about being locked up. At least in a town 40 miles away he will have less incentive to go wandering around (he didn't get lost here, yet, but it was the odd hours and the other lack of judgement issues that made it dangerous). If he has people to talk to he may enjoy the heck out of it. And I joked already that because he'll be in with Alzheimer's patients, he'll be able to tell the same story over and over without making people frustrated.

You have all my respect in the way you've dealt with this, stilicho. I can only imagine the relief you feel having your father somewhere safe where you're not having to worry about him on a day to day (minute to minute!) basis.

Keep your chin up (you are doing the right thing) and your sense of humour intact. AND, most of all, don't forget to take care of yourself!

(((((((((dhartung)))))))))) You have been doing a tremendous job handling everything that has fallen upon you. The stress alone must be overwhelming. I'm glad your dad is safe now, and now you and your mom can breathe easier, without worrying what he will do next. I hope you can find peace now, you're in my thoughts.

Yeah, it's definitely a chance to breathe easier about him. I can't slough off on the financial stuff, though. We still have three empty apartments to fill and one to evict, for example. And now I'm really wondering how the numbers look for the bankruptcy.

Went up to the place for our first visit. He actually hugged my Mom for the first time in months (years?). He had been given a really nice architecture book by a colleague who went up before us, but he wanted us to take it home already instead of having something interesting to read. We also brought up a family portrait taken a few years back with my parents and all four grandkids. It was just stuffed behind something amid all the clutter here, so it wasn't doing us any good, but he thought that should go home too. The clothes we gave him were all acceptable to him, eliminating one worry. He does seem to still sort of think he's going home eventually. Since he has FTD he's more aware of where he is than the Alzheimer's patients. He cut the visit short, again, after about 20 minutes. We'll have to have structured activities if we expect to make the 90-minute driving round trip worth our while. As we left he wanted to escort us to the front door, outside the locked wing. (I'm concerned he'll be able to figure out the keycode.) We had to have an aide help us stop him. Then he plaintively watched us through the glass as we traversed this long hallway (bad design, it should be around a corner).